Thrombocytopenic Purpura Support Group

I feel like I need to talk and vent a little.
I was diagnosed with TTP on September 16, 2009. I had originally gone to the ER for pancreatitis. After being in the hospital with that for 2 days my platelet count fell to 18,000 from 205,000 overnight. I spent 2 weeks in the hospital getting my platelet count up to normal via plasmapheresis before coming home. I spent the next two weeks getting my blood work done every morning to make sure all my levels were somewhere close to normal range. Now I am down to once a week. My LDH is elevated above high normal right now. I still have the catheter in my neck for the plasmapheresis in case I relapse. I have no medical insurance at all. I initially went to Kaiser ER and was admitted. After I was discharged they called me and let me know that I could no longer receive any form of treatment from them until my bill was paid in full. I feel as if I was thrown on the street with these tubes in my neck and had no where to go. So, I now go to another hospital and have not seen a doctor at the new hospital yet (almost a month now). The new doctors that I have now that only look at my labs once a week want me to keep the catheter in for 12 more weeks. I am really concerned about the risk of infection. My husband takes care of the cleaning and changing the bandaging. He is doing an awesome job. It looks really good around it but there is always that risk of infection lingering in the back of my mind. The doctors from Kaiser found 7 cases in the world that were possibly caused from pancreatitis. They also gave me a blood thinner for some reason. So, at this point we don't know which caused it or if either one did at all. Thanks for listening. :)
Posted on 10/21/09, 04:10 pm